Face Forward Spotlight: Ruby Castilho

The formula is simple:

Ask an incredible individual that I’ve met through my blog to answer six questions.

Featuring “Fabulupus” co-author,  Jessica Kundapur was an amazing way to launch the Face Forward Spotlight series and I’m equally excited to introduce awesome human #2 – RUBY CASTILHO:


Ruby, who lives in the UK, was diagnosed with lupus at the young age of 16. Ruby reached out to me in 2015, the year her desire to create awareness and support for others led to the birth of her blog, positivelylupus.

Two years later, Ruby has gone from birthing a blog to expecting her first child! She will be blogging about her pregnancy, aiming to:

“sugar coat as little as possible and just tell you all the truth, as it happens.”

I know there are many women with lupus who will benefit from her insights as she experiences the challenges and joys of the months ahead. For those of you who are meeting her for the first time, let’s put her under the Face Forward Spotlight and get to know her better:

How would your closest friends describe you?

My friends would probably describe me as a quirky, happy go lucky character who looks on the bright side and is happy to help with what I can.

If you could go back in time and speak to your past self right after your lupus diagnosis, what advice would you give yourself?

The only advice I can think of is to make myself more aware of what lupus actually is, as it wasn’t until probably 2 years or more after my diagnosis that I started to understand my condition and body properly.

What is the most important thing you think a caregiver/partner of someone with lupus should know?

A partner of someone with Lupus should first of all know that they are awesome for sticking by them, but also not to be upset or disheartened when there is nothing much they can do to help with the pain. But that by being there by our sides is more than we could ask for. If your partner is stubborn and ditsy like me, the best thing you can help with is helping to spot any changes to their behavior/actions/physical appearance as we may not realise small changes ourselves, however they may be a big clue as to what’s about to come.

The mental and emotional struggles that come with lupus can be as challenging as the physical. Who/what helps you face forward when you’re feeling bogged down by the mental and emotional strain of having lupus?

One thing that helps me is my cats, they never fail to cheer me up. I feel like pets can read your emotions, and also they are just so silly and cute it can’t be helped but to lift your spirits! I think the best thing is just to find something you really enjoy, whether it be playing with your pets, visiting a special location, cooking, etc to help you de-stress.

What is one positive thing that has come out of your lupus journey?

One positive outcome of having lupus is that I have really learned to understand myself and my body, what my body needs and what is best for me. Of course I am still learning, but I feel that I wouldn’t be who I am, as confident as I am about myself if it wasn’t for lupus. I’ve learned to care more about myself, and to cherish the things that actually matter most. Because of this I can be more rash when making decisions and not be too concerned about what other people will think about my decisions, as long as I know that it is what’s best for myself.

Face Forward is described as a meeting place on the journey towards balance, health, and epic adventure. Share something adventurous that you’ve always wanted to do.

One thing I have always wanted to do is to go sky diving, in a beautiful place like Dubai. I love travelling the world and seeing different cities, cultures and cuisines. Seeing all of this from above I think would be incredible!


I love that we were able to connect despite thousands of miles (and an ocean) between us! Thank you, Ruby, for having the courage to share your story. You can follow Ruby’s journey through her blog, postivelylupus.

Would you like to be featured in Face Forward’s Spotlight series? 

Email: elena@lupusfaceforward.com

8 Years Later: Why I’m Still Here

8th Blogoversary

So much has changed since I started this blog, but what remains is my belief that this matters. My voice, your voice, researchers, physicians, caregivers – we all need to be part of this conversation. Our stories connect us, unite us, and bring us closer to understanding illness and how to live with it.

It seems appropriate that today, on the 8th “blogoversary” of Face Forward, I would stumble on an article that implied false information about the treatment and curability of lupus. It reminded me of why I want to be here, why I will continue to try and find a way to fit blogging and patient advocacy into my life. It’s hard to be consistent, to be here as much as I want to be, but I want to try. I want to keep myself in the conversation, to find other voices, to turn up the volume. 

It’s not just about building awareness to support research towards finding a cure. It’s also about creating a community that goes beyond your specific illness. There is a common language and wisdom in our journeys that can inspire and empower. I am honoured that I’ve been approached by patient advocates of all kinds and I plan on continuing to share the work that they do.

My story here on Face Forward began when cancer survivor, Lisa Ray, started telling hers. Storytelling is contagious and it’s the one thing that shouldn’t be cured.


Monday Inspiration & Good News!

Need some serious inspirational Monday vibes? Check out Shanelle Gabriel’s video below! I LOVE what this fellow lupus warrior has to say about fear and the unexpected freedom her diagnosis gave her.

I also have an exciting update – Face Forward has been nominated for a WEGO Health Award! Two years ago, FF was nominated for Best Kept Secret and Best in Show. This year, FF has another Best in Show nomination. I have no idea who nominated me – whoever you are – THANK YOU! I am honoured to be considered a “patient leader” and to be counted among so many inspirational individuals who are making a difference in the lives of those with a physical and/or mental illness. Congrats to all the other nominees!


The Gift of Unconditional TLC

Happy Sunday! I hope you enjoyed Valerie’s take on what we can all do to raise awareness in Friday’s post. Since the awareness mojo is already flowing, I thought I would share the article I wrote for New Life Outlook that lists ten more ways you can help raise lupus awareness. Click on the screen shot below and let me know if you have any ideas of your own to add to the list!

awareness article

It’s Victoria Day long weekend here in Canada, so many of us are at the cabin, campgrounds, or settled in for a comfy and relaxed few days at home. Where I live, May long weekend is notorious for giving us heavy rain or as is the case this year, a chance of snow (shudder). Yet, regardless of the forecast, there remains this determination and will to unwind, come hell or high water. The drudgery of daily life can be a black hole, so we cram all that TLC into small pockets of time; long weekends, Christmas holidays, vacation time. Somehow we believe that our worlds will balance in that small amount of time, which is why vacations can sometimes feel more stressful than relaxing. Even in our leisure time, we put pressure on ourselves to achieve instead of letting ourselves relax without conditions.

I like the idea of unconditional TLC, but I am realizing that putting that into practice is another thing entirely. I’m currently on a self-gifted, extended break to recover from several energy depleting months. I am two weeks in and I filled the entire first week with volunteer commitments and the second week, I managed to assemble a schedule that was just as busy. It’s a different kind of busy, which I think is okay, but I need to give myself some time to unravel and breathe first. No avoidance, no conditions, no need for justification, just BECAUSE.

Do you feel like you have to justify the breaks you give yourself? Are you able to create space in your life for “long weekend moments” everyday?

I know my posts have been few and far between in the last little while and most have been around information sharing of various kinds. I’ll be jumping back into my storytelling-focused posts very soon, I promise! In the meantime, I hope you all create some space today for some unconditional TLC!